The high cost of Autism
Mothering has a good article on the treatments available for Autism and a list of resources at the end of the article.
Our Financial Struggle with Autism
By Julie Thomas
Cody was a normal, happy, healthy baby, and as we approached his second year, life was good. We had good jobs, a lovely home, lots of friends, and exciting hobbies we planned to share with Cody. We had begun to think of having a second child. Though we didn't know it at the time, our financial security and future radically changed one morning in the early spring of 1999, when I took our sweet Cody for his 12-month vaccinations. This began a health odyssey that would change his life forever, and would test our mettle and drain our pocketbook in ways we had never imagined.
After Cody's vaccinations, life changed. He immediately developed chronic constipation. Ear infections, absent before, became frequent. He developed allergies and inflammation. Skills he'd already acquired regressed or disappeared, and new ones came very slowly. He became rote, inflexible, and obsessed with books and doors. Sounds, textures, and animals upset or terrified him. His jovial personality gave way to intense screaming meltdowns, sometimes more than 30 a day. It took three more years and visits to almost 30 medical providers before we finally had a diagnosis: autism.
Though relieved to finally know what was wrong with Cody, we knew the diagnosis meant a great challenge for our family. But while we knew it would take a small army of specialists to bring Cody back, we weren't worried about the cost. Our three years of searching for a diagnosis had been difficult but not horribly expensive. We used only mainstream medical providers who were members of the network of our health-insurance company, which paid most of their bills. (This was before health insurers were hit with a tsunami of claims related to autism, and were still paying claims without all the denials we see today.) We assumed that government health and social programs, public schools, and our health insurance would provide much of what Cody would need.
We were tremendously naive. We had no idea how difficult it would be to get meaningful help, or that we would end up paying for most of it ourselves. In the six years since Cody's diagnosis, our direct, out-of-pocket expenses in fighting his autism have been approximately $250,000. It's an understatement to say that that is a lot of money, and we are nowhere near done. Cody is now ten years old and as sweet as ever, but the emotional and financial prices of our long, arduous fight against his autism have been bitter pills to swallow.
Educational Services Come Down to Money
When we got the diagnosis, Cody had been in our school district's developmental-delay preschool for one year. They allowed him 30 minutes of speech therapy and five to seven hours of group preschool per week during the year, and a total of ten hours of services each summer. This was not enough. A then recent research report by the National Research Council concluded that young children with autism need at least 25 hours per week of educational intervention year-round.1 Even ten hours a week?which was more than Cody was getting?had little effect. Private specialists who evaluated or worked with Cody also recommended this intensive educational intervention.
Our Financial Struggle with Autism
By Julie Thomas
Cody was a normal, happy, healthy baby, and as we approached his second year, life was good. We had good jobs, a lovely home, lots of friends, and exciting hobbies we planned to share with Cody. We had begun to think of having a second child. Though we didn't know it at the time, our financial security and future radically changed one morning in the early spring of 1999, when I took our sweet Cody for his 12-month vaccinations. This began a health odyssey that would change his life forever, and would test our mettle and drain our pocketbook in ways we had never imagined.
After Cody's vaccinations, life changed. He immediately developed chronic constipation. Ear infections, absent before, became frequent. He developed allergies and inflammation. Skills he'd already acquired regressed or disappeared, and new ones came very slowly. He became rote, inflexible, and obsessed with books and doors. Sounds, textures, and animals upset or terrified him. His jovial personality gave way to intense screaming meltdowns, sometimes more than 30 a day. It took three more years and visits to almost 30 medical providers before we finally had a diagnosis: autism.
Though relieved to finally know what was wrong with Cody, we knew the diagnosis meant a great challenge for our family. But while we knew it would take a small army of specialists to bring Cody back, we weren't worried about the cost. Our three years of searching for a diagnosis had been difficult but not horribly expensive. We used only mainstream medical providers who were members of the network of our health-insurance company, which paid most of their bills. (This was before health insurers were hit with a tsunami of claims related to autism, and were still paying claims without all the denials we see today.) We assumed that government health and social programs, public schools, and our health insurance would provide much of what Cody would need.
We were tremendously naive. We had no idea how difficult it would be to get meaningful help, or that we would end up paying for most of it ourselves. In the six years since Cody's diagnosis, our direct, out-of-pocket expenses in fighting his autism have been approximately $250,000. It's an understatement to say that that is a lot of money, and we are nowhere near done. Cody is now ten years old and as sweet as ever, but the emotional and financial prices of our long, arduous fight against his autism have been bitter pills to swallow.
Educational Services Come Down to Money
When we got the diagnosis, Cody had been in our school district's developmental-delay preschool for one year. They allowed him 30 minutes of speech therapy and five to seven hours of group preschool per week during the year, and a total of ten hours of services each summer. This was not enough. A then recent research report by the National Research Council concluded that young children with autism need at least 25 hours per week of educational intervention year-round.1 Even ten hours a week?which was more than Cody was getting?had little effect. Private specialists who evaluated or worked with Cody also recommended this intensive educational intervention.
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